And Life a Dream

And Life a Dream

I walked the horse around the hayfield even though it had yellow eyes

and would hardly let me touch it. I brushed the field dust off,

soon it was there again. If I kept watch, watch would be kept over me,

I thought. Plums rotted the branch, every few minutes I passed them.

I didn’t want anyone to come near me while I was in those fields.

-Katie Ford, “Petition”

The meaning of life is that it ends.

Franz Kafka

When I asked my brother-in-law Matt about his experience of September 11th, he told me that he was walking across the bridge, away from Manhattan, under a cloud of ash and smoke, the city on fire, and he thought: I can’t believe I’m awake for this. It was a dream. Vivid and horrible, with elements of both the real and the unreal, the mundane colliding with the unbelievable. Walking away from his office in the Financial District was something he did every day, only on this morning he walked in the opposite direction and through chaos as the streets burned and the sky glittered an almost crayon-colored blue.

Any catastrophic event – one that changes a nation’s or an individual’s consciousness – routinely elicits a reaction of disbelief, all the known unraveled, everything splitting apart. The feeling of tumbling – up, down, sideways, backwards, in circles. When Ronan’s diagnosis – his death sentence, really — was delivered in the eye doctor’s office, I felt like the walls were moving; they were no longer beige but purple, glittering, closing in. Walls with open jaws. The nurses were like phantoms, moving in and out of the room with paper cups of water and white sedatives balanced like little rafts in their palms, whispering, promising relief and oblivion, trying not to stare but staring. My voice: not mine. The chairs had changed color and moved across the room. I was standing on my heart, which was simultaneously beating in my nose. I was screaming into the phone but no words left my mouth. My hair was on fire but my face was cold. My fingers were on the ceiling and I had swallowed my own teeth. I had landed in a super fucked up version of Wonderland, with no peppy Alice, no tea parties, no smiling cats. What do you mean there’s nothing to do? I can’t believe there’s nothing to do. Rick was saying. Action was required, it seemed, but action was useless. Yet in my blown-apart mind I was already brokering a deal. If you take Tay-Sachs from Ronan I will do anything you ask, I’ll stick a knife in anyone’s heart, just say the word. Jesus, Zeus, God, G-d, Allah, anyone. Useless bargaining with a higher power I had long ago stopped believing in. I prayed, to my own horror, and I was so overwhelmed, so out of my body, so fully in the dream of disbelief, that I actually believed that it might work. Riding home in the backseat, clutching at my kid who sat giggling in his car seat, oblivious to his condemnation, it couldn’t be happening, I thought I can’t believe I’m awake for this. I don’t want to be awake for this.

I am still not fully awake, and maybe I never will be again, not fully. I’ll be like that horse with the yellow eyes in Katie’s poem, wary of touch and tenderness. And I will never return to that eye doctor’s office and the part of me I left behind there. My ritual detour to avoid Cedar Street takes me through a neighborhood where a single word – penis – is painted in a neat cursive scroll along the low walls surrounding a small, sweet park.

Katie’s poem (from the collection Deposition), is part of a series of poems that re-imagines the stations of the cross. These poems take us out of the purely sentimental or prurient – both of which are often present in stories that try to re-imagine Jesus’ journey to the crucifixion. Here we are privy to the thoughts of a doomed man. Here Jesus is human; not just a vessel in the story of the journey to salvation. He is not an end goal; he’s a person. Everything is charged and frightening and potentially explosive. Nothing is touchable. The broken mind wants to be left alone; it’s the only way to keep the pieces intact. I often feel a great desire to be left alone, to walk and walk and walk. I don’t believe in Jesus, but I can recognize the imagined voice in this poem.

To petition is to pray, of course. One offers petitions. One is a penitent. Pilgrims journey the twenty or so miles from Santa Fe to Chimayo each year, the last half mile sometimes on their knees. They walk and crawl and stumble, and often as a kind of trade; in the 70s one man walked because his son had returned unharmed from Vietnam. Others walk to be healed, for peace, for comfort, and they all walk for answers. They leave crutches and crucifixes and photos and notes. They leave shoes for Santo Nino, the little toddler saint who scurries around performing acts of mercy and forgets about the wear and tear on his shoes. But petitions are ultimately like lists: endless, pointless. There’s nothing more depressing than discovering a stack of old to-do lists. All those things that seemed so important to accomplish, forgotten now in the buzz and whir and blindness of every day living. Reading them is like trying to fit into an incomplete shadow of your former self. Once when I was cleaning the drawers of my house in Martindale, Texas, a house where a woman had lived for fifty years before being taken to a nursing home with dementia, I found a list: bread, potatoes, beer, CALL ALICE. The saddest list in the world.

I don’t believe in prayer because it seems like just another way of wishing for luck, that mysterious and bitchy little two-faced sprite. What does it mean that a friend gets down on her knees and begs for her father to be freed from cancer, and he dies while someone else goes into remission and survives? One’s prayers were stronger than another’s? God chose someone and not someone else? Mercy is meted out on merit? Someone deserves it? We say this all the time: you deserve to be happy. Do we? Does a baby deserve a long life? Of course, we see a baby and see innocence; we don’t see what or whom that baby might become. Does a murderer deserve the death penalty? Yes, we might say, but we certainly don’t imagine that person as a baby. Does someone deserve to live past 30, 42, 57, 76? What does anyone truly deserve? You’re a survivor! people say, but nobody survives everything.

In one of Ronan’s physical therapy exercises we place him in a blanket and, using it like a hammock, we rock him from side to side until he rolls to his right or to his left. A new position, a way of experiencing movement without having to muster the brain power to move, which he doesn’t have. Roll, roll, roll your Zoat, gently down the stream, merrily merrily merrily merrily, life is but a dream, we sing, using his nickname. He likes to be on his side. He can still reach out. Rick and I put him between us in the bed in the morning and roll him from one side — “Here’s the Mommy,” to the other –“Here’s the Daddy.” This often makes him laugh. He’s still interacting, not yet in that future state where he will not move or see.

Prayer chains, prayer loops, broken-record prayers, prayers written on walls. I’ve taken names for the prayer list before for my dad. Someone might “pray for the Savior’s Guidance,” or “ask for God’s comfort.” There are tiers on the prayer chain, depending on how sick you are or what you need/want/desperately require. A chain of command, with God and Jesus at the top. You can choose your level of intercession. It makes me think of double coupons or fire sales, as if people truly have a choice. I’ll give this for this. Choose your own death adventure. I’ll pray for you people say, and I want them to. Maybe they know something I don’t, and usually I believe they are being loving and trying to be helpful. But really I think that nobody knows anything at all. And maybe that’s okay. I am constantly seeking some kind of explanation for what’s happened to us, for what has happened, for what has already happened. Meanwhile, Ronan requires nothing of me – no proofs, not charts, no stories.

Death destroys all the constructions we create: our bodies, our minds, our careers, our meaning on the earth, our silly little dramas. It strips away every delusion. It leaves us bare.

I feel bare most of the time, and not always capable of rubbing up against what’s outside the door of our house on Sol y Luz Street. It doesn’t make sense to invest in anything (that future-oriented act) because the future makes no sense. But Ronan makes sense, sitting here beside me now, watching the blades of the ceiling fan spin. He’s my buddy, my pal, my little doomed and dying dude. He is completely helpless and absolutely extraordinary. I watch him and sing to him and he coos and quacks at me. Does he know who I am? Who knows? Maybe I’m just another face in what is his constant waking dream. Maybe he’s just one in mine. We do a lot of napping together, and it is always after these peaceful snoozes, maybe the only decent sleep I get, when I feel the greatest loss. There he is, but I know he won’t always be. Here he is, but someday I’ll wake up and it will just be the birds outside the window and the impossible, silent sky.

At the Wailing Wall in Jerusalem you can slip a wish between the gaps in the stones, scribbled on the torn end of a napkin or a smoothed-out receipt. Five years ago I shoved a few words written on the back of a fortune slip from a cookie and I don’t remember the wish. To marry the man I had come to Israel to be with? Maybe, although I did not marry him. I felt almost sick when I shoved my skinny wish into the wall. The stones looked covered in spit balls, pieces of paper sticking out of every corner, every available crack. We had just been to the Garden of Gethsemane, a tiny olive grove fronted by a church with a grumpy priest whose shushing noises spiraled up into the rafters. It felt small in that garden, and sad. The place where Jesus (supposedly) contemplated his death was overrun with sunburned tourists arguing with one another and snapping souvenir photographs. There were so many people at the wall, too many. Praying voices everywhere, men in one section and women in another. The noise of all those wishes, those wails, both heard and unheard, seen and unseen. All those fingers searching for space where their ardent little prayer might fit. I felt a weird stomach-drop of grief. I wanted to be alone in the hazy twilight, away from anyone’s imagined future, including my own. I wanted to walk again past the Roman city that had recently been unearthed beneath the old city when a construction project broke ground. It all passes away; people once walked through those streets below the current walkable streets. Under our feet they had worried and hurried and obsessed and loved. They murdered and lied and forgave and started again. Maybe we must be hidden before we are found? But that’s too easy. That sounds too much like the lyrics of a song.

“Grief is what tells you who you are alone,” Gail Caldwell says in Let’s Take the Long Way Home. When Ronan dies, I will have witnessed the entire span of his life, this dream, these few years. And then he will be gone. I will be alone. To know that it’s coming, of course, will spare us nothing.

But after we are not spared, after it is over, then what? Will I again have to pass through, as Caldwell describes, that “madness of early grief,” those moments in the eye doctor’s office? I hope not. But there will be other places to travel. How many doorways and thresholds are left to cross? How many fields to traverse, harvest, burn to the ground? I want to be left alone in the field of my grief, in the dream that spins around Ronan. I want to sit and stare and speak and be left alone.

In the midst of pondering these existential puzzles I watch adaptations of Charles Dickens novels on Amazon. Period dramas never disappoint, and since Andrew Davies seems to have adapted all of them for the screen, they have a predictable tone and feel to them. A Dickens villain is wholly villainous; the goodness of his heroes and heroines never falters. All the plots hang almost entirely on coincidence and chance encounters. No wonder his stories are such a comfort; it can be a relief to sidestep the gray areas and just dwell in black and white, one or the other, this or that. The good are rewarded and the bad are given their just due. Honor trumps wickedness in Dickens as it never does in real life. It’s like Law and Order for British Victorian times.

Yesterday I went for a walk under a cloudy sky, the air uncharacteristically humid, some distant rumble in the sky. The usual complicated mid-afternoon New Mexico skies. Ronan was napping. I needed to “take an airing,” as a character in Dickens might say. Roaming around in the mostly-deserted mini-mall at four o’clock on a Saturday afternoon on a holiday weekend, I found a frozen yogurt store and a cupcake store, one right next to the other. When Ronan was a newborn and only slept when he was strapped into the front pack, I walked every day to San Vincente Boulevard in Brentwood for a cupcake and a big bucket of frozen yogurt covered in chocolate chips. I ate over Ronan and sometimes had to clean frosting from his bald head or pluck a chocolate chip from behind his ear. Yesterday afternoon I sat down on the curb and wished someone would run me over with a truck. A dream, a dream, a dream.

Picking up take-out Vietnamese food in the grim strip mall near our house I saw a woman carrying a baby, probably about a year old, although my recognition of different developmental stages has faded with Ronan locked at six months. If an evil spirit, some anti-angel had appeared at that moment and said you can give that baby Tay-Sachs and Ronan will be just fine but you will burn in hell for the swap I would have done it. I’d give it to myself, to Rick, to my parents, to anyone, really, even this unsuspecting parent. A million times I’ve said I wouldn’t wish it on anyone but that’s not exactly true. Grief is ruthless and brutally immoral. And of course these hypothetical situations add up to nothing because they’re impossible. Still, at these moments of condemnation (of others and of myself), I feel alone in a cage with some wrathful animal. We circle each other, come forward and retreat, forward and retreat, bearing our teeth, provoking, strategizing, bargaining, preparing to strike. We know who the other one is, but we are unable to make a connection. If we do, one of us will die.

The future stretches out – tenuous, terrifying, unstable – as it does for everyone, but I preferred believing that I had at least some control. Knowing that nothing will ever be this hard is hardly a comfort. Every change bears a time stamp; every change of season might be Ronan’s last. I could have soldiered happily on in that delusion; like most people, I might have gone through the rest of my life not knowing I was a carrier for a fatal disease, as most of us are, even if it’s not Tay-Sachs. Nobody is freed from genetic calamity. The future is a dream I have no interest in getting to know. Ronan will be freed from his body, which can only be a good thing since it’s killing him. But is the point then just to go on? To keep teaching, writing, maybe parenting more children, maybe moving states, jobs, countries, lives? If you’ve been nomadic for so long, if grief stretches your emotions so threadbare, if all life becomes a kind of waking dream where nothing’s real, nothing matters, nothing sticks? Then what?

This might be a growing-up-Christian problem, because salvation is supposed to stick. It’s the offering, the prize, the end of fear, the end of death.

This morning I heard a man on the radio quoting a study that had attempted to prove that the onset of paralysis was directly linked to that person’s emotional paralysis. The thesis was that our emotions are yoked to these vessels, our bodies, and if they are compromised, so are our feelings. We’re less sad and less happy, the researcher argued. We’re just less. I couldn’t listen to the entire interview, because it made me both relieved and afraid. Will Ronan feel less as the disease progresses, and will that be some kind of mercy in the end, when he’s unable to fight death? When he doesn’t know what’s happening to him? The other Tay-Sachs moms were right; he dies a little bit each day. I often feel like I’ve let go of him in a dark hallway and he’s started to run and at first we’re nose to nose, the two of us, and then he sprints away and I’m slowed by something – fatigue, confusion, fate, some inability to do the right thing – and very quickly he’s out of reach. And then I can no longer see him, and then I’m alone. Only a dream. In the meantime, I’m crossing fields every day, quaking, trying not to touch anything.

7 responses to “And Life a Dream

  1. Oh, Em–I wish I wish I wish–

    I grew up with no notion of love other than what was meted out by my delusional mother, who alternately derided me for having feelings, whatever they were, and told me, with a combination of mirth and hateful condescension, that I had been born with a heart of stone, and could not feel. Love was just something mothers were told they felt for children, but it was a trick of the patriarchy and not everyone, certainly not my mother, felt the need to be a slave to the patriarchy. There was, of course, no spiritual community in my childhood–only the received belief that religion and ritual were for the stupid, the desperate. Christianity was pure myth; Jesus a name thrown at me by children in the neighborhood, by friends’ parents, as proof that I was less-than, unwanted, set apart.

    When I was diagnosed with cancer earlier this summer, suddenly everyone said they were praying for me. At the Catholic school I work for on contract, whole board meetings uttered prayers; some people even went to Chimayo on my behalf. I was grateful for every single prayer, not because I thought it would get me in good with God, or even that it meant I would “beat cancer,” but because contrary to what I believed about myself–no one could ever really love the girl with the heart of stone–it turned out my existence mattered. People who had no stake in my life cared enough about their fellow humans to tell me so, to ask me how I was doing, to send e-mails and cards, to inquire about my health and well being, to send flowers after my surgery. They cared enough about my life, or my death, to spend their time thinking about me, hoping for me, and yes, praying for me–even if on some level it was a reflex. That the reflex included me was astounding. To whom they were praying–Jesus, or whose version of Jesus; God, or whose version of God–didn’t matter. For the first time in my life, I could feel that love existed outside of my mother’s twisted, bastardized feminist theory, and I knew it wasn’t a lie, even if the people praying believed in a myth. They prayers of people I barely knew had one more unanticipated result: I learned to believe in and trust the love of the people closest to me–my husband, my father, my vast extended step family, my friends. Even members of my estranged family on my mother’s side reached out.

    I know that in his short life, Ronan will receive more strings-free love and affection than some people are able to feel all through the long, lonely years of adulthood, when there is no mom-creature around to tell you where you belong in the world–that you are the kind of child the world loves, or the kind the world will ignore and beat down. He will continue to be loved after he is gone, when you pick up the shattered parts of your life and stick them back together with what I envision are frayed, lint- and hair-covered scraps of every kind of tape–Scotch, masking, duct, the black plastic kind you wrap around pipes. I pray for you guys every day, but since I don’t know any God, my prayers are like wishing. And what I wish for you is peace–as intermittent as it might be; clarity, as painful as that is when delusion would be preferable; solace that doesn’t make you feel worse; and for you to know–and you do know–that you are not alone on this earth, in the here and now, where we live, sometimes in the muck, and sometimes, sometimes, in the sun.

  2. good writers paint you a picture, great writers take you into another world….please be a survivor in this one, as Ronan makes his journey….

  3. This reminded me of the games I played in my head – beat the devil/god/other delete as applicable – when Dad was ill. “I’ll see your random stranger and raise you a house/village/town/country of people I’ve never met and will never meet for a cure/chance of a cure/week extra/day extra/smile.” It’s a lousy game but weirdly comforting, like picking at a scab even when you know it will heal slower and leave a scar: irresistible.

    I left work today and was confronted with an animal rights campaign poster saying that a whole load of charities in the UK (including Cancer and Alzheimer’s charities) carried out research on animals. Even now, 6 months on, I still get an immediate wash of rage, an urge to shout “so f*cking what – do you have family with the disease?” and rip down the poster. Experiments? I would have sacrificed species by the legion for a cure and faced whatever immortal court with head held high and no regrets. Maybe. Maybe not. But I challenge anyone in the same place not to wonder, not to second guess and ask what if.

  4. Your love for Ronan is so tangible, dear Emily. I hope you can feel the love that your family and friends have for you. It’s real and constant. Thinking of you and Ronan napping together…..

  5. Thanks so much for this post. As a formerly-religious person (you may recall the obnoxious religious me from high school), I still like some of the imagery and other times, even when I don’t like it, I find the words creep into my vocabulary. So, I appreciate the religious references in your stories even when you are discounting them.

    Your picture of grief is so much more accurate (if that’s the right word) than I what I grew up with. For some reason, I keep thinking of the hymn, “It is Well With My Soul.” I still like the hymn on some level, but I was at a funeral recently where that was held out as the model. Why should it be? It isn’t always well with our souls. We should grieve. And we should be honest about grieving. And for your honesty, I appreciate your writing and this blog. Thank you.

  6. I think I now better understand Dragon Mom. I thought I did before, the invincible energy that rises to protect our kids, but yours, you are fearless, and yes on dark days, you may say it’s because you don’t have a choice, but it seems, you made that choice to be a warrior for your son. You are amazing.

  7. Dear Emily,

    A friend posted a link to your NY Times article on Facebook this evening. I read it and wept. I have a two year old son and cannot imagine the challenges that you and your family are facing. I wanted to know more about Ronan and found your blog. I have admittedly not read all of it yet, but I did read this post and felt a need to reach out. (I do not know what your relationship with God has been in the past. It seems like you were raised in a Christian environment but left it for some reason or another. I apologize if you have said why in another post.)

    With that said, I’m asking you to please watch the video of our sermon from church this past Sunday (Oct. 23). You can find it at:

    The message is about 40 minutes long. It sounds like a lot, but I’m hoping that you will watch it anyways.

    Please watch it for Ronan’s future. I know you feel like he doesn’t have one, but he does. True, that it sadly for us will probably not be for much longer on this earth, but the one that is waiting for him will be much better than anything here. Please try to know God again so that your son can too.
    He can have a beautiful, eternal life.


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